Recently I wrote a post about feeding tubes. My son Michael also posted “My First Feeding Tube”. Along with the feeding tube that helps Michael stay hydrated there are a lot of other things that we have learned along the way about eating with Myotonic Dystrophy (DM). The rest of my family doesn’t have feeding tubes but they all have GI (gastro-intestinal) discomfort and issues. Each person has food items that are particularly difficult for them. My oldest, Warren, can’t eat bread or pancakes. They always get stuck in his throat. If he does eat them and they get stuck he has to lean over until his upper torso is upside down and cough in order to get it out. So, he avoids these foods.

However, Michael and Chad, my younger sons, can eat soft bread but they can’t eat rice. I was recently watching an MDF video https://www.myotonic.org/digital-academy/nutrition-issues-related-dm. In it Kari Lane, Clinical Dietician, talks about getting important nutrition. She is very aware of DM issues and talks about the need for leafy greens in everyone’s diet. The best way to get leafy greens for those with swallowing issues is to make a shake with them in it. I purchase a fermented alkalized greens drink mix with probiotics and put it in our morning drink.

Kent, my husband, and I make a drink every morning with nutrition powders that we need to consume such as vitamin C, protein, etc. I thought that I could put this alkalized greens drink mix in it so that Kent could get some greens. But it gets caught in his throat and gives him a cough for as long as an hour after drinking it. So I don’t give it to Kent unless I take the time to make a shake for him. Taking the time to make a shake doesn’t happen very often. So Kent doesn’t get the greens in his diet that he should unless we make a salad, Kent can handle salads. Michael and Chad make shakes every day and put their necessary nutrition powders in it along with this greens drink mix, frozen fruit and spinach, therefore they get leafy greens.

My point is that it takes a lot of creativity to get necessary nutrition into the diet of our DM community. Another detail to pay attention to is stacking your calories, specifically if you need to gain weight. This refers to adding high calorie items to something that you are already going to go to the work of eating. Adding protein and fats, such as extra mayonnaise to your sandwich is one idea. Fats and protein are nutrient dense and adding these to anything that you eat can help put on weight. We had to do that for Michael before he got his feeding tube. In the last year both Andrea and Chad have had such low weight that there was great concern. They both weighed about 115 pounds and Andrea is 5’4” and Chad is 5’8”.

In addition to stacking their calories we purchase non-dairy protein drinks for them from Kate Farms and have them drink 2 each day. Other protein drinks, probably because of the dairy in them, caused them a lot of GI issues. Adding these to their diet worked and they both are at a healthy weight now. Andrea still drinks 2 a day. Chad doesn’t need to drink them anymore.

Besides working on eating healthy nutrition there is the issue of digestion and GI distress for my DM family. We were taught about pelvic floor physical therapy at an MDF conference. When we asked the MDA neurologist about referrals for pelvic floor therapy they didn’t know anything about it or where to refer us. We kept searching and found out that the referral needs to come from a GI doctor. It seems that we are always needing to teach our doctors and the neurologist was very appreciative of us educating her about this option for those with DM.

Both Andrea and Michael see a GI doctor Dr. German. He has taught them about supplements that work to keep the GI distress reduced such as Miralax and Citrucel. Their GI doctor referred them both to a pelvic floor physical therapist. The field of pelvic floor physical therapy originally started to help women recover their strength and function after childbirth. Eventually they realized that there are many other individuals that could benefit from this therapy and it has evolved to help people with GI distress.

Peter is the pelvic floor therapist that Michael sees. Due to myotonia Michael’s pelvic floor muscles, all of the muscles that affect elimination, are firing. In other words, they won’t relax. This is how his body has always been so he wasn’t aware that there was anything that he could do different. Peter taught Michael how to control these muscles and how to work through the muscle spasms. He also taught Michael techniques to massage his abdomen since his smooth muscles have very poor movement (motility). Before working with Peter we weren’t aware that Michael couldn’t pass gas. No wonder he was always having stomach pain and discomfort. Learning to control his pelvic floor muscles has allowed Michael to pass gas. Also massaging his abdomen helps move the stool so that it doesn’t sit in his gut as long and create gas.

I recently erroneously learned from something that I read on Facebook that Miralax is toxic. Sweet Michael trusts me implicitly so he went off of the Miralax. He added other items into his GI regimen hoping to make up for the fact that he wasn’t consuming Miralax. His elimination seemed to work for about a month but then his bowels started backing up. We were on vacation so I was there to witness first-hand the pain that was caused by his inability to eliminate. We increased his Colace, gave him a magnesium drink, prune juice, and anything else that we could think of. It was heart breaking watching him suffer. I finally reached out to Dr. German and confessed my stupidity and asked him what we should to do give Michael some relief. Dr. German was very responsive and sent me instructions for a bowel cleanse to help get Michael’s bowels working again.

I was so naïve to think that it wasn’t a big deal doing what was already working for Michael. After the fact I remembered that it has taken a lot of work to get Michael’s GI system functioning well and when it comes to DM, after all of the work done on our part to get some level of functioning, I need to not listen to random posts that might critique some of the techniques that we use. DM affects so many systems and people without it most likely don’t understand what it is like to live with DM.